Transcript Respite in a healthy marriage - AHMREI | Alabama Healthy

Give Me A Break:
Respite Relief for Parents of Children
With Special Needs
Maintaining a Healthy Marriage While Caregiving
Presented by
Alabama Lifespan Respite Resource Network
Linda Lamberth and Java Bennett
Alabama Respite is a project of UCP Huntsville and Tennessee Valley, Inc.
Our Objectives Today
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Who
What
When
Where
Why
How
Needs Respite?
Is Respite?
Do I Need Respite?
Can I Find Respite?
Do I Need Respite?
Can Respite Promote a Healthy
Marriage?
What is respite?
Respite is a temporary break for caregivers of
individuals with disabilities or chronic illness so that
they may take time for themselves or spend time
with family members or loved ones other than those
they care for.
Who needs respite?
All families with children face stress and/or hardship
that place them in need of respite at some time in their
lives.
Respite services are most often requested and utilized
by caregivers of children with physical or emotional
disabilities or chronic conditions; or families at risk of
abuse or neglect.
National Clearinghouse on Child Abuse and Neglect Information (2001).IN FOCUS: The Risk and Prevention of Maltreatment of Children with Disabilities
http://nccanch.acf.hhs.gov/pubs/prevenres/focus.cfm.
Who are the Caregivers?
Caregiver
A caregiver is the person primarily responsible for the
day to day care of a loved one with a chronic illness or
disability.
There are an estimated 400,000 caregivers in Alabama
who are providing over 425 million hours of unpaid
care at at market value of over $4 billion.
59,000 grandparents in Alabama are providing full
time care for a child under the age of 18.
Why Do I Need Respite?
Long-Term caregiving for a loved one can put a strain
on any relationship. Often many lifestyle adjustments
need to be made to provide long-term care.
There is no "typical" family. Each situation is unique, and
each caregiver and the person they care for will
eventually create a system of care that works best for
them.
Although caring at home
for a child or adult with
a disability or chronic
illness can be rewarding,
it can also be stressful –
emotionally, physically,
mentally and financially.
When Do I Need Respite?
Learn to Recognize Stress
What is stress?
Stress is a physical, chemical, or
emotional factor that causes
tension in your body or mind.
Most everyone has some type of
stress in their life. Stress is
common because it is almost
impossible to escape.
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Signs of Stress
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Denial
Anger
Social withdrawal
Anxiety
Depression
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Exhaustion
Sleeplessness
Irritability
Lack of concentration
Health problems
Asking for help is a sign of strength - not weakness.
It may not be easy at times to ask for and receive
assistance.
This difficulty usually stems from several notions of
thought:
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If I ask for help, will that be a burden on the
person helping me?
I don’t know about respite care.
I know about respite, but don’t know where to
find it.
I don’t have money to pay for respite help.
If I take respite, will I be considered a ‘bad’
caregiver?
ARCH National Respite Network www.chtop.org/ARCH
How does respite help promote a
healthy marriage?
KEEPING YOUR MARRIAGE HEALTHY WHILE
CAREGIVING
A healthy caregiving relationship centers on:
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Open communication
Learning the facts about how life will be with your loved one with special
needs
Willingness to adjust your views in many areas
Paying attention to the health of both the individual with disabilities as
well as the caregiver
Recognizing stress
Spending time away from caregiving to be with each other
As a caregivers, you and your partner will likely
face many unique challenges
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Worry and concern for the condition of your loved one
Stress over juggling work and finances
Getting your home accessible for caregiving
Keeping your marriage healthy while caregiving
Managing Self-Health
Learn how to take care of your
loved one, but
Learn how to take care of
yourself.
Your health is essential to your
wellness and ability to adequately
care for your loved one. You
cannot expect to effectively care
for your loved one when you are
in distress.
Adopt a Healthy Lifestyle
• Get enough sleep
• Eat regular, healthy
meals and snacks
• Participate in regular
physical activities
because your body can
fight stress better when
it is fit
• Get help -find time for
yourself.
Partner or Spouse Caregiving
Couples should keep the
partner/spouse role separate
from the caregiver role.
1. Have a routine
2. Have a specific area or room
devoted to intimacy
Maintain Equality –
Couples should contribute to every day issues like
parenting, chores and money management.
Equality helps a caregiver to NOT become
overwhelmed or resentful.
How Does Respite Help?
“Respite can help to save a struggling marriage
or a stressed out family at their wits end. It
provides the much needed (and much deserved)
break that any caregiver needs to help take care
of themselves, and ultimately, their loved ones.”
ThnkPos http://citizensbriefingbook.change.gov/ideas/viewIdea.apexp?id=087800000004qDH
Respite has been shown
to improve family
functioning and life
satisfaction, enhance
capacity to cope with
stress, and improve
attitudes toward the
family member with a
disability (Cohen and
Warren, 1985)
Respite provides caregivers of children with a disability
a break from the stresses of parenting.
Parent stress can be a significant precipitating factor in
child maltreatment.
National Clearinghouse on Child Abuse and Neglect Information (2001).IN FOCUS: The Risk and Prevention of Maltreatment of Children with Disabilities. http://nccanch.acf.hhs.gov/pubs/
prevenres/focus.cfm.
Without adequate
family
support…children
with disabilities are
nearly 4 times more
likely to be neglected,
physically or
emotionally abused.
(Sullivan & Knutson, 2000).
Statistics on the divorce rate
of couples who have children
with disabilities is somewhat
higher than in families with
typically developing children.
Approximately 50 percent for
first marriages a close to 75
percent for second marriages.
Married with Special-Needs Children A Couples’ Guide to Keeping Connected By Laura Marshak and Fran
Pollock Prezant ~ 2007
Where is respite?
Respite is the service most often requested by family
caregivers, yet it is in critically short supply, inaccessible,
or unaffordable regardless of the age or disability of the
individual needing assistance.
Caregivers are often overlooked in the provision of comprehensive abuse
and neglect prevention and family support services, despite the fact
that an estimated 25% of the U.S. population are caregivers.
U.S. Census, 2000
Disabilities in Alabama
The 2000 U.S. Census reports there are 942,000
Alabamians with a disability.
45,509 are 5-15 years old
625,152 are 16-64
275,044 are 65 +
Respite in Alabama
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Medicaid Waivers
Alabama Cares
Faith Based Respite Programs
Adult Day Care
Voucher respite for those caring for loved ones
with mental retardation, cognitive delay or
developmental disability.
Medicaid Waivers
Elderly and Disabled Waiver
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Must meet the Nursing Facility Level of Care
No age requirement
Financial Eligibility
– Individuals receiving SSI
– income is not greater than 300% of the SSI Federal Benefit Rate
Waiver Size/Slots Available 9,205
Operating Agencies
– Alabama Department of Public Health (ADPH)
– Alabama Department of Senior Services (ADSS)
MRDD Waiver
Mental Retardation/Developmental Disability Waiver
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Diagnosis of Mental Retardation (MR)
Age Requirement: 3 years and older
Financial Eligibility
– Individuals receiving SSI
– Income not greater than 300% of the SSI Federal Benefit Rate
Waiver Size/Slots Available 5,260
Operating Agency - Alabama Department of Mental Health and Mental
Retardation (ADMH/MR)
Living at Home Waiver
Diagnosis of Mental Retardation (MR)
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Age Requirement - Persons 3 years of age and older
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Persons not residing in a group home setting or environment
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Persons currently on the waiting list for MR services
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Financial Eligibility
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SSI recipients
Individuals receiving State Supplementation
SSI related protected groups deemed to be eligible for SSI / Medicaid
Low Income Families with Children
Waiver Size/Slots Available 569
Operating Agency
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Alabama Department of Mental Health and Mental Retardation (ADMH/MR)
Alabama Cares
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Age Requirement - Caregivers of any age who provide care to individuals age 60+
Caregivers age 60+ caring for children age 18 or younger.
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Care-recipients with greatest social and/or economic need.
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Older caregivers providing care to children with MR/DD & Caregivers who are providing care
to older persons with MR/DD
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A sliding fee scale is used to determine the client’s shared cost for certain services Services
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Operating Agency
- Department of Senior Services, Area Agency on Aging
Voucher Respite
Voucher respite is funding paid directly to you, the
caregiver, so that you can hire whomever you wish, at
whatever time you wish.
You may use the funds allotted to you all at once, or in
little bits over the approved quarter.
HEARTS
United Cerebral Palsy of
Alabama (UCP),
through the Department
of Child Abuse
Prevention -Children’s
Trust Fund of Alabama
for those who are caring
for a child, up to age 19
with a developmental
disability or at risk of
abuse and neglect.
Department of Mental Health
Alabama Respite has funding through the Department
of Mental Health for caregivers of children and adults
who have cognitive delay or mental retardation.
Both of these sources of funding respite allow you to
choose your own respite provider.
Respite provider must be over the age of 18 and does
not live in your home.
What About Alabama Respite?
• Alabama Respite is a statewide network of
resources and referrals for respite.
• We try to answer the who, what, when where, why
and how questions about respite.
• We can refer you to an appropriate source for
respite.
• We can help you start a respite program in your
church.
• In some cases we can help you pay for respite.
How Can I Help?
Encourage your Family Resource Center, fatherhood
program or healthy marriage program to work with
Alabama Respite to provide some needed funding for
you to take a break.
• Educate state and federal legislators about the
benefits and need for respite.
• Call or email your legislators and let them
know you are a caregiver and you need respite.
If you don’t know who your legislators are,
Alabama Respite can help you
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Caregiving takes hard work and
devotion. Providing care for a
loved one is an expression of
affection and commitment.
You can expect to experience ups
and downs. You may feel
overwhelmed, stressed or
unappreciated
However, it is equally important
that you make a commitment to
take care of yourself because that
is important for you and the
person you care for as well.
Contact Alabama Respite
Alabama Lifespan Respite Resource Network
1521 E 9th Street, Anniston, Alabama 36207
256 533 4167
866 737 8252 toll free
• Web site: www.alabamarespite.org
• Email: [email protected]
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A Statewide Project of United Cerebral Palsy of Huntsville and
Tennessee Valley, Inc.